Supporting families and caregivers of children with disabilities through a parent peer mentor (PPM): experiences from a patient-oriented research network.

BACKGROUND: The CHILD-BRIGHT Network created a parent peer mentor (PPM) role to support other parents who were engaging as partners in the different research projects and activities of the network. We aim to describe how a PPM functioned to support parent-partners of children with disabilities in research projects within the Network. METHODS: In this case study, the PPM approached 50 parent-partners and scheduled a 1-on-1 initial telephone call to offer support for any issues arising. When consent was provided, the PPM recorded interactions with network parent-partners in a communication report in an Excel form. Also, verbatim transcription from one in-depth interview with the PPM was included for data analysis using qualitative description. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) was used to report on involvement of patient-partners. RESULTS: A total of 55 interactions between 25 parent-partners and the PPM were documented between May 2018 and June 2021. The PPM's support and liaison role contributed to adaptation of meeting schedules for parent-partners, amendment of the compensation guidelines, and ensuring that internal surveys and the newsletter were more accessible and engaging. The PPM also facilitated community-building by keeping parent-partners connected with researchers in the Network. Families and caregivers in the Network were comfortable sharing their experiences and emotions with the PPM who was also a parent herself, allowing researchers and the Network to learn more about parents' experiences in partnering with them and how to improve engagement. CONCLUSIONS: We highlight the important complementary role that a PPM can play in enhancing patient engagement in research by better understanding the experiences and needs of parent-partners.

In this paper, we add new insights into the complementary role of the Parent Peer Mentor (PPM) in promoting optimal patient engagement practices in a national patient-oriented research network. The PPM approached 50 parent-partners and scheduled a 1-on-1 initial telephone call to offer support for any issues arising. We analyzed the recorded interactions between the PPM and the network's parent-partners of children with brain-based disabilities as well as an interview with the PPM. The PPM's liaison role contributed to establishing reciprocal connections with parent-partners in a nation-wide research network. The perceived impacts at the individual level included: (1) parents felt more connected to the PPM and were comfortable sharing their experiences and emotions, and (2) researchers learned more about parents' experiences in partnering with them and were able to address the issues raised such as adjustment of the meeting schedule and clarification of roles within the research team. At the Network level, adjustments were made based on feedback from the PPM to include structural adaptations to the compensation guidelines and use of lay language in our communications to patient-partners. Community-building and authentic partnerships were enhanced by the increased understanding of the experiences of patient-partners.

Patient engagement in a national research network: barriers, facilitators, and impacts.

BACKGROUND: Little is known about patient engagement in the context of large teams or networks. Quantitative data from a larger sample of CHILD-BRIGHT Network members suggest that patient engagement was beneficial and meaningful. To extend our understanding of the barriers, facilitators, and impacts identified by patient-partners and researchers, we conducted this qualitative study. METHODS: Participants completed semi-structured interviews and were recruited from the CHILD-BRIGHT Research Network. A patient-oriented research (POR) approach informed by the SPOR Framework guided the study. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) was used to report on involvement of patient-partners. The data were analyzed using a qualitative, content analysis approach. RESULTS: Twenty-five CHILD-BRIGHT Network members (48% patient-partners, 52% researchers) were interviewed on their engagement experiences in the Network's research projects and in network-wide activities. At the research project level, patient-partners and researchers reported similar barriers and facilitators to engagement. Barriers included communication challenges, factors specific to patient-partners, difficulty maintaining engagement over time, and difficulty achieving genuine collaboration. Facilitators included communication (e.g., open communication), factors specific to patient-partners (e.g., motivation), and factors such as respect and trust. At the Network level, patient-partners and researchers indicated that time constraints and asking too much of patient-partners were barriers to engagement. Both patient-partners and researchers indicated that communication (e.g., regular contacts) facilitated their engagement in the Network. Patient-partners also reported that researchers' characteristics (e.g., openness to feedback) and having a role within the Network facilitated their engagement. Researchers related that providing a variety of activities and establishing meaningful collaborations served as facilitators. In terms of impacts, study participants indicated that POR allowed for: (1) projects to be better aligned with patient-partners' priorities, (2) collaboration among researchers, patient-partners and families, (3) knowledge translation informed by patient-partner input, and (4) learning opportunities. CONCLUSION: Our findings provide evidence of the positive impacts of patient engagement and highlight factors that are important to consider in supporting engagement in large research teams or networks. Based on these findings and in collaboration with patient-partners, we have identified strategies for enhancing authentic engagement of patient-partners in these contexts.

This qualitative research paper seeks to understand patient engagement in large teams and networks. Patient engagement is the meaningful and active partnership of patients on a research team. We aim to understand the factors needed in a research environment that consider and include patients. Patient engagement was measured through interviews with 25 CHILD-BRIGHT Network members, either patient-partners or researchers, about their experiences. In this study, patient-partners were the parents of youth affected by brain-based disorders. We identified factors that made it easier or more difficult for patient-partners to engage with the projects and the network. Additionally, we looked at the impacts of patient engagement as observed by the interviewees. We found that at the project level and network level, the factors that helped engagement and made it difficult to engage were similar for both patient-partners and researchers. At the project level for example, open communication and factors specific to patient-partners (e.g., motivation to contribute) were identified by patient-partners and researchers as helping engagement. Maintaining long-term engagement and ensuring meaningful collaboration were identified as factors that make engagement difficult. At the network level, both patient-partners and researchers noted that communication (e.g., regular follow-cup) made it easier to engage while time constraints and asking too much from patient-partners made engagement more difficult. Finally, interviewees shared that patient engagement impacted patient-partners, researchers, and the research being conducted. Patient engagement helped ensure that the research reflected patient-partners' priorities, allowed collaboration, and provided patient-partners and researchers with learning opportunities. The results of our research have allowed us to identify strategies that can be used to create more meaningful engagement within large research teams.

Ensuring Equity and Inclusion in Virtual Care Best Practices for Diverse Populations of Youth with Chronic Pain.

Poor access to care is a top patient-oriented research priority for youth with chronic pain in Canada, and the COVID-19 pandemic has exacerbated these concerns. Our patient-oriented project team engaged with marginalized and racialized youth with chronic pain (Black youth with sickle cell disease, Indigenous youth and youth with complex medical needs) and their families to ensure that best practice recommendations for virtual care are inclusive and equitable. Input provided through virtual round-table discussions improved recommendations for leveraging, implementing and selecting best platforms for virtual care for youth with chronic pain and identified new gaps for future research, practice and policy change.

Posterior Shoulder Instability Classification, Assessment, and Management: An International Delphi Study.

OBJECTIVE: To reach consensus among international shoulder experts on the most appropriate assessment and management strategies for posterior shoulder instability (PSI). DESIGN: Delphi. METHODS: In phase 1 of the study, we reviewed the literature, generated the Delphi items, created the survey, and identified clinical experts. In phase 2 of the study, clinical shoulder experts (physical therapists, orthopaedic surgeons, sports medicine physicians, and researchers) participated in a 3-round e-Delphi survey. For consensus, we required a minimum of 70% agreement per round. Descriptive statistics were used to present the characteristics of the respondents, the response rate of the experts in each round, and the consensus for PSI classification, assessment, and management. RESULTS: Round 3 was completed by 47 individuals from 5 different countries. The response rate ranged from 57/70 (81%) to 47/50 (94%) per round. Respondents agreed on 3 subgroups to define PSI: traumatic (100% agreement), microtraumatic (98% agreement), and atraumatic (98% agreement). CONCLUSION: International shoulder experts agreed that the clinical presentation, management strategy, and outcome expectations differ for traumatic, microtraumatic, and atraumatic PSI. Their recommendations provide a framework for managing these subgroups, with additional consideration of sport and work participation and subsequent risks. J Orthop Sports Phys Ther 2020;50(7):373-380. Epub 29 Apr 2020. doi:10.2519/jospt.2020.9225.